Month: May 2015

I posted this update for contributors to my fundraiser a while back, however I thought I should put it here as well for completeness.

I have had the powerchair for a few weeks now and I have used it to go to hospitals, to shops, and on one 8 mile adventure to Tesco to try and stretch the batteries. Unfortunately I finished that adventure calling for help because I ran out of charge, but then the chair was able to fit in my rescuer’s car, so it ended well! Karen has used the powerchair herself a few times. She is recovering well and is now off crutches most of the time.

This powerchair has made a huge difference to me and I am really grateful to all of you who donated. Thank you so much.

Given the results of this general election, it’s more clear than ever that we need to make use of every tool outside of Parliament to stand up for ourselves. To stand up for our rights, our participation, our safety and our sanity.

It’s my feeling that a new national organisation, formally constituted and mebership-based, would be a strong way to ensure the voice of disabled people in politics, in civil society, and in the media. I have nothing against DPAC and Black Triangle, and I hope their work continues. Indeed, the organisation I envisage would hopefully work with them, along with all sorts of DPULOs, and anyone else that it makes sense to work with. The organisation I envisage would be dedicated to constructive policy work and campaigning in all areas, not just political. Inaccessible town centres, healthcare inequality, disabled people’s sports – raising the profile of all these, and more, and saying how we, disabled people, want things fixed – and having the data and policy work to back it up. And yes, that includes working to protect the social security that so many disabled people rely on, but also so much more.

We don’t have to call it a union – it wouldn’t exactly be part of the trades union movement, but I see it working in a similar way. A national executive, policy votes, meetings and similar. Of course, meetings can never be terribly accessible for many disabled people, so we’d do more absentee voting at meetings, and more things by referenda. But we would have a solidly defined constitution, and membership. So it could be called ‘union’, or ‘association’, or ‘fellowship’ – there’s arguments for and against a lot of language options. What’s important is that we do it.

I truly believe that, done right, such an organisation can carry the confidence and embody the unity of disabled people. We won’t all agree on policies, there will be internal politics, but we can see how many organisations out there make this work. We agree to follow our collective will in essentials, even while being free to disagree publicly. Not every disabled person would support it, but if we do it right, enough will. A credible, mature and accountable voice for disabled people on the national stage – with accountability, making it easy for everyone to participate, and allowing for differences of opinion without fragmenting.

I don’t have all the detail worked out, but here’s my thoughts so far. Two-stream membership, with different voting rights – self-identified disabled people as full members, and carers and allies as associate members. Our carers and allies are vital, and they must have a voice, especially carers, but the organisation must be led by disabled people ourselves. A constitution that embeds concern for intersectionality, that we will not discriminate against disabled people on the basis of other characteristics – be it race, sex, education, economic status, national origin (or even nationality), whatever. Not party-political, but admonishing all political parties (and politicians) equally, as merited. Praising that which is good and castigating that which is bad. Caring as much about supporting each other as about making noise and seeking change – providing advice and advocacy would be an excellent thing to incorporate.

Yes, an organisation doing this is going to need money. I don’t envisage employed staff any time soon, though if it takes off that’s a possibility. But organisation generally costs money, like room hire, renting a PO box, printing, and even legal advice. Some of that might come from contributions in kind, and we can always hope for a few big donors, but membership will probably need to cost money. I don’t know how much. Perhaps charge associate members more than full members, partly due to the fact that disabled people are more likely to be in poverty, and partly because that demonstrates our allies’ commitment to us as disabled people. Of course, concessional rates would be needed – carers are scarcely in a better position than disabled people, certainly. I’d love to sit down with some other people who are prepared to get this off the ground and sort out these initial details. Heck, I’m happy if other people run with the idea and I just end up a member, but I’m willing to do work to start it – I just can’t do it all.

There’s so much more that I could say: how we can directly address businesses and other organisations, not just politicians; how we can facilitate a structure of affiliate organisations to allow for local branches; how a clear forum that we have ownership of will allow us to be open about our fears and our hopes and, yes, our differences.

In that one sentence last night David Cameron dismissed my life as nothing. My family were poor. We received benefits when my dad worked, and we received benefits after work made him disabled. I went to university in spite of this background, and received a student grant. While I was studying I became sick with what I would later find out was a mitochondrial disease. I still worked when I could, albeit intermittently and claiming incapacity benefit at times. Later I started a computer repair business but became too sick to work after a year of that. Now I live on benefits – I am in the Support Group on ESA, which is for people that even Atos and the DWP admit are unlikely to be able to work in the foreseeable future. I also receive DLA, Housing Benefit and various others.

What none of this has done is make my life worthless. I do not have “no life at all.” I am a person, with experiences, who has contributed to society just by being myself. I enjoy things, I create things, I learn things, I say things. I talk to friends and make new friends. And all of this despite starting my life on benefits and continuing it now on benefits. All of this despite the fact that I may never be able to undertake paid employment again.

David Cameron, though, disagrees. Asked to stop talking about the economic reasons for his policies and talk about the moral issues, he said:

“helping people into work is the most moral thing”

– David Cameron, BBC Question Time 30/04/2015

Except it’s not, though, is it. Helping people to find paid employment is not the most moral thing, even if that was what the Tories had been doing rather than yanking away support and telling people to sort themselves out. What is actually the most moral thing is making sure that all people have food and shelter, and the ability to live a life that they find value in. Paid employment is only one path to that. Paid employment (or attempting to start your own business, for that matter) is an option that is for many not available – whether that is from lack of available jobs, lack of training, sickness and disability, caring responsibilities, or some other reason.

We as a society are able to provide for everyone. Less labour is required to feed and clothe us with every new day. We do have jobs that need doing, such as in care and healthcare, but private employers aren’t going to pay for those. If we want more people to be employed then others are going to have to work less. But employers want to extract maximum profit from the minimum amount of pay so that isn’t going to happen any time soon.

One thing is certain: People like David Cameron and Iain Duncan Smith have no idea what the lives of people on benefits are like but they judge us anyway. They decide we have miserable meaningless lives but then make everything so much worse by snatching away support and telling us to get jobs that aren’t there or that we are unable to do.